1. < Stroke & Cerebrovascular Diseases

Fibromuscular dysplasia (FMD): Want to connect

Posted by lpyne @lpyne, May 17, 2024

I have had 2 neck CT scans and both found MFD- my neurologist states it’s nothing to worry about. In the mean time I have suffered from chronic dizziness, headaches, anxiety symptoms, ringing ears. I have seen a cardiologist, neuro vascular specialist and had a wide variety of tests that all seem normal- except the neck CT. No MFD in renal artery. Curious if I should ignore it like my doctor is telling me or if I should seek a second opinion?

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

mom4thelord | @mom4thelord | 1 day ago
In reply to @lpyne "Chronic pain in the absolute worst thing when nothing seems to help. you must be your..." + (show)
@lpyne

Chronic pain in the absolute worst thing when nothing seems to help.
you must be your own advocate- seeking second opinions. I can’t imagine that any doctor would think it’s normal for me to be dizzy 24/7 and nothing helps. And then to be diagnosed with fibromuscular dysplasia on 2 different CT scans - only for them to say “it’s not blocking blood flow to your brain so your fine” ignore it…. Wow! Let me just ignore that until I have a stroke or worse 🙁
Now I’m going to doctors that specialize in dizziness and getting those second opinions.
I’m also being my own advocate and getting back in shape physically and emotionally. Some days it’s impossible.. but I do it anyway because in the end every little bit helps. You can do this! Keep your head up!

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Thank you for the encouragement. I’m new and I feel all alone.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @chanda79 "I have FMD also. The risks and anxiety are real. I had 3 strokes at 45...." + (show)
@chanda79

I have FMD also. The risks and anxiety are real. I had 3 strokes at 45. When will Mayo start an FMD support group? Thanks!

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@chanda79, members are talking about Fibromuscular dysplasia (FMD) in the Stroke & Cerebrovascular Diseases Support Group https://connect.mayoclinic.org/group/cerebrovascular-diseases/

Here you can connect with other FMD-ers like @lpyne @123sandy @parrot53 @GratefulEveryDay @kelsi @mom4thelord @queenkeb @caroline58 and others.

I can imagine having had 3 strokes at the age of 45 is scary. Yes, the anxiety is real. What signs and symptoms were you told to watch for?

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caroline58 | @caroline58 | 19 hours ago

Hi, from Sweden. I have FMD in both carotid arteries and in the brain, probably in more places.
I am followed up by a doctor at the medical and vascular clinic at my hospital every 3 months (I work as a nurse there). The dialogue takes place in writing in our medical record system, I write down my symptoms and then she assesses whether I need to see her or not.
Despite my X-rays with CT angiography, the degree of stenosis has not been assessed, which would be important for me to know how narrow my vessels are, which shows how quickly the muscle walls grow in my arteries and how soon I can get sick.
No, the medical follow-up is not good in Sweden either. I had a TIA in 2023 and have headaches, ringing ears. pain from my left shoulder all the way up to my ear, especially when I do something.

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caroline58 | @caroline58 | 19 hours ago
In reply to @mom4thelord "Thank you for the encouragement. I’m new and I feel all alone." + (show)
@mom4thelord

Thank you for the encouragement. I’m new and I feel all alone.

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I think we all feel abandoned, alone with our FMD and far too poor follow-up by doctors and with X-rays. Hugs!!

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sue1986 | @sue1986 | 18 hours ago
In reply to @mom4thelord "Look for another doctor and look again and again until you find a doctor who can..." + (show)
@mom4thelord

Look for another doctor and look again and again until you find a doctor who can treat this disease.
I have the exact same symptoms. I feel like I’m going crazy. Now on this sight (first day) I feel a litter better just knowing that others have the same thing. I see my vascular surgeon for the first time tomorrow. Hoping he can help. The problem with FMD is that there doesn’t seem to be any doctors that specialize in FMD. I’ve had to make a lot of phone calls to find this doctor. I hope he will be able to treat it. I’m sorry say that a lot of vascular surgeons don’t know enough about it to treat it.

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What’s the vascular surgeon saying? I will see my first vascular surgeon next Tuesday and I am so nervous. Thank you!

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Moderator
Lisa Lucier, Moderator | @lisalucier | 18 hours ago
In reply to @kelsi "Just found out i have FMD in both carotid arteries with a dissection in my left...." + (show)
@kelsi

Just found out i have FMD in both carotid arteries with a dissection in my left. Already had brain surgery to remove a huge meningioma and brain surgery to remove a vestibular schwannoma. Am now deaf on the right side. Still have 1 meningioma in my head. Life is not easy. I love being a walking ticking time bomb. Also, I have to wait for 10 months to see a vascular neurologist. I'll probably be dead by then.

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Hi, @kelsi - you've had a significant diagnosis with the FMD in the past few weeks, and I see you've also had some major brain surgeries in the past. I'm sorry to hear you have to wait a 10 months to see the vascular neurologist. Just wanted to check in and see how you are doing?

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caroline58 | @caroline58 | 16 hours ago
In reply to @lisalucier "I wanted to check in with some of you to see how things are going. @ellerchim..." + (show)
@lisalucier

I wanted to check in with some of you to see how things are going.

@ellerchim - how are you doing? How are things with your eyesight?

@queenkeb - You'd mentioned having swooshing in your ear and pain in your neck laterally, plus migraines and blurred vision. How are your symptoms?

@caroline58 - how is the vertigo lately?

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Slightly unsteady, sometimes slips when I walk fast, had worse problems in August.
Thanks for the question, since January I have had hot flashes at night, pain problems, a slight fever sometimes, daily pain on the left side of the neck from shoulder to ear, icy cold hands and one leg sometimes but daily, eye pain, increased headaches and the worst nausea around the clock.

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